Patient reported outcome measures for COPD: Including people with low literacy and intellectual disabilities

Background: Patient reported outcome measures (PROMs) are standardised, validated self-report measures of health and functional status (e.g. in chronic obstructive pulmonary disease (COPD)). In the UK they are increasingly used for quality improvement purposes. However people with low literacy skills or intellectual disabilities may find them hard to complete potentially excluding them from quality improvement processes. The aim of the study is to explore how routine data collection using PROMs can be made more inclusive.

Methods: We conducted 8 semi-structured interviews with people with low literacy skills and/or intellectual disabilities, and 2 focus groups each with health professionals and people with COPD. The discussion covered general issues related to health literacy and accessibility. The EQ-5D and St George Respiratory Questionnaire were used as stimulus material.

Results: Several adjustments can make PROMs more accessible and easy to use for people with low literacy skills or intellectual disabilities. Health professionals discussed the complexity of language whilst people with intellectual disabilities discussed the need for pictures and larger font sizes. While professionals suggest completing PROMs in waiting rooms, patients generally preferred settings where they can access people they trust including family members or support workers. All groups saw the value of PROMs to monitor individual treatments, less for general quality improvement.

Conclusions: The PROMs used in this study could benefit from design adjustments and extensive flexibility in their administration to make them more accessible and easy to use, and to avoid excluding people with low literacy skills or intellectual disabilities.